Access by Various artists

7

What Your Child Needs To Know About Disability

by Chelle Hope

There is a big difference between the way children I am related to interact with me compared to the children of strangers who might encounter me for the first time, perhaps as they walk towards me on the street, or seeing me in a crowded restaurant, or waiting in line at the supermarket checkout.

While I don’t have any children myself, I do have nieces and nephews. The eldest is very nearly an adult, the youngest was brought in his mother’s arms in a rabbit onesie for a family meal at Easter.

Children who have grown up around me aren’t particularly curious about why I use a wheelchair or even what my disability is. I would guess that my sisters and other relatives have probably spoken to them and answered their questions about disability, if they have ever come up. I don’t know. We really haven’t discussed it. One of my nieces must have been nearly four when I had my leg amputated. She either didn’t notice or it didn’t bother her enough to ask about it.

The conversations I have with relatives don’t tend to focus much on disability and if they do, they are not usually about disability as an abstract concept. The conversations I have with family relate back to my life and their lives and our lives together. Disability is a big part of who I am, so it’s bound to come up but there is always a context to it with family.

With people who have not experienced disability first hand, it is a much more abstract concept. It is clear to me by dint of my experiences with able bodied strangers that people can find it difficult to know how to act around me. A lot of able bodied people aren’t really sure what to think and many have conveyed to me that they are nervous about saying the wrong thing. The net effect of this discomfort can be both frustrating and comical. Sometimes it is both at the same time. It’s hard sometimes just to exist in a world that isn’t sure how to process you as a concept.

It must be difficult then for parents or other caregivers to know just what to do or say when children in their care encounter a person with a disability, perhaps for the first time.

Often, especially if the child is very young, they will ask unapologetically loudly something like, “Why are they in a wheelchair?” More often than not, there will be a comment with pointing. Something like, “Hey, look!”

Try not to feel too embarrassed. We get it a lot. I can only speak for myself but I don’t find the genuine curiosity of children to be a problem at all. We are pretty used to answering questions or letting innocent comments float by. If you are embarrassed, the child might think there was something to be uncomfortable about and their future encounters with disabled people might become associated with that feeling. While I don’t enjoyed being stared at, being made to feel invisible by people who are doing their best not to stare is just as uncomfortable. Better to allow the child to feel comfortable with exploring the idea of difference.

For older children, I think it’s important to instil the idea that learning about people who are different to them is good and healthy but we should also be allowed our privacy. 

Throughout my life, I have had a great many inappropriate questions asked by both older children and adults who think that they are entitled to know things about me that are really none of their business. Nobody really needs to know a lot of the answers to questions asked in public to people with disabilities.

Questions like, “Do you sleep on a bed? How do you get into bed?” or “How do you go to the toilet?” really should be viewed as too personal and information given to children about the actual mechanics of bodily functions in people with disabilities should, in my view, be kept to a minimum. In my experience, children don’t really want to know those details anyway. What they want is for things to make sense to them.

You can model appropriate behaviour for children by not asking questions that come purely from curiosity and in particular those questions that might be personal or embarrassing to answer. Making jokes about a person’s disability, however well intentioned, is also not appropriate behaviour. Not all of us are going to have the same sense of humour and there is a very fine line between laughing with someone and at them if you don’t know a person.

It’s important that children view people with disabilities as people. They will most easily do this if you model that behaviour to them. Keep in mind that I likely have things to do just like you. I’m happy to answer simple questions from children but you might have to answer any questions requiring more time and thought, later. You know best what your child will understand. Lastly, please don’t yank your child away from me and tell them off if they ask me a question. I don’t want to be responsible for your child being told off for their curiosity.

While there are a few tips I can give parents and caregivers on how to teach a child about disability, I firmly believe that modelling things like an interest in diversity and difference, a curiosity in the world around us and respect for others is much more important and worthwhile than the specific content of any conversation you might have with a child about disability.

10

Stroppy parents and battling bigotry – what changes?

by Hilary Stace

A file of decades-old letters can be mesmerising. Especially in a quiet library or archive with 2017 locked outside. Fragile, handwritten letters, typed and faded carbon copies, annotated missives. Who wrote them, why, and what was happening? What energy, and battles motivated them to write and, significantly, keep this material for future researchers?

This is an historian’s happy place. But the serendipitous merging of research passions makes for an even better day. This happened to me recently and although the material dated from 1949 it still resonates.

Some topics entrap researchers. One of mine is Janet Fraser, the influential wife of Labour Prime Minister Peter Fraser. She died in midway through his term as Prime Minister, following which he lost much of his reformist spark.

Another of my favourite subjects is the history of the organisation now known as the IHC. Deborah Hill Cone wrote recently  that if there was a militant activist wing of the IHC she would join it. There is. They are called parents.

Stroppy parents founded the Intellectually Handicapped Children’s Parents’ Association in 1949 because they wanted schools and day programmes and community participation and rights and justice for their disabled children ‒ and for themselves too. They were supreme and fearless lobbyists. Generations of IHC parents since have continued this advocacy for their children, young and older – always striving to ensure a sustainable, good-enough life for when they are no longer around to lead the battle.

Janet Fraser, like her future husband, was born in Scotland and immigrated to New Zealand in the early years of the 20th century. Both staunch practical and intellectual socialists, they met in the political ferment that became the NZ Labour Party and soon became a partnership. She was married to someone else, although apparently separated, and had a young son so Janet could not marry Peter until her divorce came through. By then Peter had served a jail term as a wartime conscientious objector had been elected Member of Parliament for Wellington Central.

In another era, Janet would have been a Cabinet Minister, or even a Prime Minister. In those days when the activist left women made policy as a well as tea, she assisted the cause in less noteworthy ways. Those Labour women were a stroppy lot too. She was on the Hospital and numerous other boards and committees through the tough days of the Depression, and when Peter became Prime Minister she acted as his unofficial administrator and policy advisor, vetting visitors and bringing him meals during the famously long hours he worked. (Her granddaughter told me she was not the type of grandmother you hugged with floury hands.)

Her influence led to the decision to bring Polish refugee children to New Zealand, and numerous arts and health initiatives of the First Labour Government. She hosted a war time visit her of her friend Eleanor Roosevelt, before dying of TB in 1945. But as there was little publicly recorded about her (or indeed many of the Labour women and wives) history quietly forgot her.

The other day I was back immersed in the early days of the Intellectually Handicapped Children’s Parents Association in the extensive IHC collection held at the Turnbull Library, searching for historical evidence that the modern day IHC needed to honour a bequest.

Those stroppy parents who founded the IHCPA in October 1949, had, after much negotiation, persuaded the Wellington Education Board to allow them to build a school for their children (who until then rarely attended schools, as institutionalisation or staying at home all day were the only two options for disabled children) in Oriental Bay, near the bottom of Grass Street. Correspondence documents the support of Peter Fraser for their cause. But just a few weeks later, at the end of Novermber, the Labour Government lost the General Election.

Then I came across a faded carbon copy dated Dec. 8th, 1949 from Margaret Anyon, the formidable founding secretary of the IHCPA, asking Peter Fraser’s permission to name this new venture “the Janet Fraser Memorial School” because:

The work of the late Mrs. Fraser in pioneering activities pertaining to these children is known by all those who have been interested, and her sincere interest and kindly understanding of social problems needs no comment. The Committee felt that this would enable her name to be coupled with a work in which she was interested, and if the Rt, Hon, Mr, Fraser approved, the parents would feel privileged that the school should provide this tribute.

But the Janet Fraser Memorial School was never built. The residents of Oriental Bay took a petition against allowing disabled children to be educated in their neighbourhood and the new National Party Minister of Education acceded to their wishes and withdrew funding. In the last few months of his life Peter Fraser, still the local MP, helped the parents find an alternative site and the children camped for a while in inappropriate rooms in the Basin Reserve before finding a property in Coromandel Street, Newtown. Families dug out the steep section and eventually built a school, a pre school and sheltered workshop there.

Almost 70 years on, in 2017, support for disabled children is just as political. The current National Party Minister of Disability Issues has criticised IDEA Services, the service provision arm of IHC, for discontinuing programmes for which the Government provides insufficient funds to provide quality services. Hence Deborah Hill Cone’s column seeking a militant arm of the IHC.

But parents are still fighting for their disabled children, young and old. Some are planning a political response with a general election only months away. The dismissive prejudice which killed the idea of the Janet Fraser Memorial School is still out there. Quality care and services for disabled children and adults are not considered worthy of Government attention. Instead they get crumbs.

But without neatly typed files, how will history record the current stroppiness?

11

A touching story

by Fiona McKenzie

I’ve just hung up the phone from a courtesy call the guy probably really really regrets making. 

He was calling from the company which has won the contract to transport our daughter Claudia, who has special needs, to and from school.

Yes, there was a terrible day at the beginning of this year when we heard the our transport provider had lost the contract from Term 2 this year – and that meant we lose Trevor! 

Our wonderful Trevor, who picks up and delivers Claudia with such good humour and friendliness. Who listens to Bowie and The Beatles and rocks it out with the guys en route.

Trevor, who with his enormous heart came to our place in the holidays and drove Claudia to her holiday programme each day because I had a fractured ankle and couldn’t do it. 

And who refused even a bottle of wine as thanks, because he’s just a good person. A really, really good person, ranking up there with Nigel in Claudia’s estimation. And mine. 

So next term we won’t have Trevor. 

Because of an unexplained Ministry of Education decision we’ll have a different van with a different logo and and a different driver. I’m sure the driver will be super-nice and well qualified and that we’ll all get used to the change. 

But hidden in page 3 of the extensive letter explaining the change was a little list of “what our drivers won’t do”. And that includes “touch the students”.

No touching. That means No Touching. At All. 

As a parent I say “What The Hell Sort Of Stupid Rule Is That You Wankers!?”

Because here’s the thing. 

Claudia will do anything for Trevor. She won’t for me.

Claudia has learnt to get in and out of the van – because Trevor has taught her. 

She does it for him because it’s his van. His van and his rules and his experience and knowledge that allows him to trust that she is quite capable of putting her foot here. 

And then there. And of holding this handle like this. And hoisting herself up like that. And then putting her other foot here. And her bag here. Like this. And then he puts her seatbelt on for her. 

That’s important. It’s not me doing things for her. It’s another person helping her and her letting them. And her learning skills from people who have skills I don’t have.

And it all increases her independence because she leaves me at the door and takes herself and her stuff  to Trevor and his van and his support and his care. 

Look, I understand there was a terrible case of driver abuse of a disabled student that rocked every parent who has to trust other people to transport our vulnerable children. 

I get that there has to be some resulting change or remedy to prevent any possibility of that happening again. 

But this blanket ban is an ill-conceived knee jerk reaction from Ministry officials who I frankly doubt have ever seen one of these vans and jumped in for the ride. 

Because these are not just nameless faceless taxi drivers who transport people to and fro. 

This is an extremely important part of Claudia's day, not just something that happens between other things. Driving with Trevor is a twice daily is an important thing in itself

The journey is a part of her routine and if you don’t think her time spent with Trevor is just as critical to her life and her opportunity for interaction and learning – yes learning – then think again Ministry! 

And if you think you can stop someone like Claudia rushing to welcome Trevor, or leaning on him adoringly to say goodbye twice a day after their regular journey together then think again, Ministry!

And what do you propose those drivers now have to do to protect themselves from her perfectly normal human interaction? Flinch? Is someone going to move away from Claudia if she gets too close? Because that will only make her chase them more. 

And what of me? Do I now have to schlep out onto the street to coax Claudia into the van to the amusement of the neighbours?

Will she get into the van willingly for me? No She Will Not. 

She will keep grabbing me and asking questions of me about what might happen later in the day or who’s coming or what time – things she never EVER hassles Trevor about – because why would she? 

And do I now have to hoist myself right into the van to put on her safety belt? 

And how could I have done any of this when I was on crutches? If I end up in plaster again (PLEASE NO!) will she just not be able to go to school? Or would I have to pay someone to come around to our house for the sole purpose of putting her in the van while the driver stands by? 

This affects thousands of students every day.

It’s a nonsense, an affront to common sense and an insult to the role these drivers have in our lives.

Twice a day, five days a week Claudia gets to ride in a van with Trevor. 

She loves driving. She loves routine. She loves Trevor. 

Just ask Claudia who her favourite people are. 

If the statement that drivers are not allowed to touch the students was intended to reassure parents that drivers would not abuse our children it hasn’t. 

It’s added more stress. 

We should have assurances about driver credentials and checks, about the new cameras in vans, and that should be enough. 

No-one asked our family about any of it. No-one asked how we would like to be better protected from potential abuse. No-one asked if any of these proposed new regulations would affect us. 

I’m sick of having things done to us in the name of our own good. 

And the bus company who shrugs and says it’s Ministry policy should be back at the Ministry advocating for us when we don’t get access to the Ministry like they do.

And all of these people should remember who they are supposed to be serving and how their job only actually exists because of people like Claudia and is what they’re doing really best for her? Really? 

Really? 

Hey Ministry of Education! Do you even know people like Claudia? 

Fiona McKenzie blogs at My Perils of Wisdom.

5

Disability and International Women’s Day

by Chelle Hope

I cannot begin to think about International Women’s Day, or indeed the experience of being a woman, without first acknowledging the role that disability plays in my life. I am a woman with a disability, a disabled woman.

Both identities have been difficult for me to embrace and even to accept at different times in my life. I never felt like I fitted in with other kids who had disabilities. They all seemed so at one with who they were. I felt like I had to fight against being disabled because of what I thought having a disability meant. It was a negative thing to me. I had been through a lot of painful surgeries, many of which were traumatic. I also had feedback from adults who would try to give me money on the street, as a way to lessen my burden, I suppose. Or they’d tell me how sorry they felt for me. I didn’t see that having a disability was in any way a positive thing.

Being a girl and a woman has never been easy for me either. I have been what in contemporary vernacular is referred to as ‘gender non-conforming’ since I was a child and I knew I was a lesbian before I became a teenager. Before I had any control over what I wore or how I might present myself, I would fantasise about getting my hair cut off into a neat buzzcut and wearing well tailored suits. Of course, in my fantasy, I was standing. A strong, tall and confident man in a business suit working with equally important people. If I were a handsome, besuited, white, able-bodied, heterosexual man, I could be important and successful.

Integrating my disability and being a woman into my identity and sense of self has been a hard fought and ultimately rewarding experience. I happily identify now as a woman with a disability, though neither way of identifying myself has ceased to be unproblematic.

Being a woman with a disability meant always wondering just how much harder I was going to have to try, to reach the level of my peers. It meant watching those same peers get ahead on an upward trajectory that I fell off over a decade ago. It has meant realising after I had tried and tried and tried, that I was never going to be able to work hard enough or be good enough anyway. I have to recalibrate my self-worth and my definition of success all the damn time. Eventually I realised on my own that none of this is my fault. All the cards were stacked against me.

The most insidious message women with disabilities are taught from a young age is that we have to be better than everyone else to succeed. This is a not-too-subtle reframing that places the responsibility on us as women with disabilities for the problems that society has in accepting us for who we are. I have very nearly died on several occasions because I thought if I just tried hard enough, I’d ‘get there’. I just had to stop trying to succeed on society’s terms in the end because it really was going to kill me. I mean that quite literally. Something has had to change in order for me to stay alive and since society wasn’t going to in a big hurry, I’ve had to.

I applied for so many jobs when I graduated and in the years following. Many of these were jobs in the disability sector. Not only was I well qualified for the positions but I also had what I know to be valuable insight into what it actually means to live with a disability and the skills to apply that experience to the work I might have been asked to do, if I’d only been given a chance.

I’ve been on the other end of a phone call from a woman who wanted to give me a job in the intersecting disability and education sectors. She had to explain to me that the two men on a panel of three had decided to award the job to a young able-bodied white man who personified exactly the person I had fantasised myself as being when I was a child. She offered congratulations and implied that it was progress that I had got so far.

That was the first full-time job I ever applied for, back when my health was not a mitigating factor in my ability to work. I sometimes wonder if I’d had a job back then, whether my health might be better now. It’s not worth pondering for too long. I had several other job interviews in my 20s for similar positions. I came second in all of them. I changed my strategy, I lowered my expectations, I embarked on further study. Nothing worked. Then my health started to fail. My turn was over and I wouldn’t get another one, I couldn’t play anymore.

Having tried over many years to find work and having worked in a number of part-time and voluntary positions, I set my sights this year on a teacher aide job. I’ve had some schools say they will get back to me if something comes up. I really hope they do. I do wonder how many schools I’ve sent my CV to have since given jobs to able bodied people that could have been very capably done by me. I can never know this of course. Discrimination is much more tricksy these days than it ever was. People have learnt that it is not ok to discriminate, so they are much more clever about it. Now, we all know it’s happening but it is done behind closed doors and out of earshot of anyone who might be able to corroborate our stories and experiences.

Being a woman with a disability is exhausting.

How great would it be to have more women with disabilities working with youth, mentoring them, making it known that we can help each other? I say women here because in my youth, I remember very few women who were put forward as role models and mentors for young girls and boys with disabilities. If we saw anybody at all with disabilities as public figures, they tended to be young disabled men who had the same focus on physical fitness and sporting prowess as the able-bodied men who were offered up as our most valued role models and representatives of national pride. I don’t believe much has changed.

I want to live in a world where a young girl with a disability can realistically aspire to be a successful woman with a disability, on her own terms. Being a woman with a disability means loving myself for who I am and not what society wants me to be but will never let me be.

Chelle Hope blogs at To be Perfectly Honest ...

80

Privacy and the right to consent are all some people have left. But not for long.

by Hilary Stace

Community organisations funded by the Ministry of Social Development under the Government’s Social Investment Strategy will soon have to hand over detailed identifiable information about their clients to the Government to get funding. This shockingly unethical policy was revealed by veteran NZ Herald journalist Simon Collins in October last year, but it has taken some time to be noticed more widely.

I was so horrified by the contravention of basic ethical principles of informed consent, confidentiality and the promotion of coercion that I spoke about it at January’s NZ Bioethics Conference in Dunedin. So I am pleased it is now being investigated by the Privacy Commissioner, and the community sector is fighting back

So-called ‘big data’ is fashionable and many are excited at the potential of these massive quantities of data for understanding and answering complex policy questions. However, big data is also a political tool which can be manipulated by those who fund or have access to it. Much has been written about Cambridge Analytica’s success in constructing a profile of each US voter in order to identify, target and encourage every Trump vote. Big data is not benign so we really shouldn’t be surprised that our current Government is also using it to implement a political ideology.

The Social Investment Strategy has been championed by PM Bill English. The theory is that with big datasets you can identify who is ‘vulnerable’ (which can also be code for a lot of other things such as being poor, brown or powerless) and you invest targeted resources in them so they improve their own lives and stop being vulnerable.

The Ministry of Social Development website describes the role of its Community Investment Strategy in implementing the policy:

The Ministry of Social Development invests over $300 million in community-based social services each year. These services help support our most vulnerable children, young people and adults to be safe, strong and independent. The Community Investment Strategy … helps ensure that these services are targeted at the right people and the right communities, based on evidence of what works…A social investment approach is about providing up-front investment to support people most at risk of poor outcomes later on in life. We will use the technology and data available to help us understand the people who rely on the programmes and services we invest in.

One of six key elements of the approach is: Improving the quality of data collection ‒ including individual client level data collection.

The State funds more than 800 approved community organisations to provide certain services through the MSD’s $330 million Community Investment fund. These organisations include women’s refuges, counselling services and budgeting agencies. Under new contracts which come into effect in July the Government will require these community organisations to hand over personal client information to the Government to get funding to provide those services.

These personal details include each client's name, address, date of birth, gender, ethnicity, iwi, country of birth, number of dependent children, birth date of the youngest dependant, and details about the service they receive.

Clients who refuse written consent or service providers who do not provide the personal information of clients to Government will be penalised by the removal of funding.

The data will be initially "anonymised" – which as ethicists know does not protect anonymity ‒ but from July this year will identify individuals. The data will be used to track the outcomes of services for individuals – i.e., become part of bigger Government databases – although how collecting the data will answer any useful questions is unclear.

This move is of course a concern for many who work with already marginalised people, as it will undermine people's trust in non-government agencies. There are fears that some of the most vulnerable people, such as those leaving violent relationships, with disabled children or in financial need may be scared off seeking help in case their disclosures are used to take their children from them or stop their benefits. Privacy and the right to consent are all some people have left.

Guidelines for the new contracts say agencies can still voluntarily help people who do not consent to share their details with the Government, but the organisations will not get funding for those clients.

This policy also compromises every agency and every professional who will now not be able to provide a confidential service. Commitments to confidentiality, which are part of many professions’ codes of ethics, will have to be overlooked.

Ethically, this whole policy sets off alarm bells. Informed consent, a basic ethical principle which can be traced back to the Nuremberg Trials, is being flouted by our Government for some mythical, magical benefits from ‘big data’. It is part of the bigger principle of respect:

  • Research should respect persons and populations. This means informed and ongoing consent, consultation, cultural awareness and safety.

For an individual to give valid informed consent, three components must be present: disclosure, capacity and voluntariness.

  • Voluntariness refers to the subject’s right to freely exercise his/her decision making without being subjected to external pressure such as coercion, manipulation, or undue influence. (According to Wikipedia)

This new policy is surely coercion. Give your personal identifiable information to the Government – or no service.

As well as the breaches of confidentiality and informed consent, there is concern that the new policy amounts to surveillance. This is a powerful tool to keep the citizens in check and there are valid concerns that some people with major issues won’t come forward because that information could be used against them by Government.

Fortunately then (from October 2016):

The Government has denied that requiring community agencies to hand over data about their clients amounts to "surveillance". Associate Social Development Minister Jo Goodhew says community agencies such as women's refuges and budgeting agencies will only have to share specified "client-level data" with the Government as a condition for funding from next July.

"The collection of individual client-level data is most definitely not 'surveillance' in any way," she said."Only the client-level data that has been included in the contracts will be shared with Government. All providers will obtain consent from clients to do so. When obtaining written consent the providers will be able to assure clients that no wider detail will be passed on… Any fears about the security of this data are unfounded."

However, Green MP Jan Logie is concerned at this shocking new policy, and in the same article said:

"The independence of the community sector is a strength, and to undermine that independence is a mistake. When people turn for help from community groups, they expect help, not a Government investigation of every aspect of their life. When Government privacy issues have proven time and time again to not be reliable or value personal privacy, it is hardly surprising that there would be suspicion of handing over further data."

Many of us remember when a former Minister of Social Development used confidential welfare data to attack two single mothers who had criticised her. Shrinking attention to ethics by many political leaders is a concern. With cross-matching between databases, and the possibility of hacking, individual privacy and confidentiality needs more attention, not less.

The current enthusiasm for the use of big data to somehow fix vulnerable people is misplaced and instead continues their oppression. The new contracts required by community organisations under the Community Investment approach ethically compromise clients, professionals and agencies – and all of us who let such things happen are complicit. We need to take back our citizenship rights.